An observational study in Well-Differentiated Neuroendocrine Tumors (NETs), sponsored by Hospices Civils de Lyon. Not yet recruiting at 18 sites in France. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-10-22.
Sponsored by Hospices Civils de Lyon · Observational
Well differentiated neuroendocrine tumors (NETs) are rare and heterogeneous malignancies that frequently evolve toward advanced or metastatic disease, requiring long-term systemic treatment strategies delivered over multiple lines. Their management is complex and influenced by tumor-related factors-including primary site and grade-as well as disease burden, functional status, patient comorbidities, and access to available therapeutic options. As a result, real-world treatment pathways in advanced NETs are highly diverse.
In recent years, the systemic treatment landscape of advanced NETs has expanded beyond somatostatin analogues (SSA), peptide receptor radionuclide therapy (PRRT), and chemotherapy to include targeted therapies. Among these, multitarget tyrosine kinase inhibitors (TKIs) targeting tumor angiogenesis have progressively been incorporated into clinical practice. Their use varies according to tumor subtype, disease dynamics, prior treatments, and patient-related considerations, reflecting the absence of standardized sequencing algorithms.
In routine clinical practice, the choice and sequencing of TKIs are driven by individualized clinical decision-making rather than predefined treatment pathways. Their positioning within systemic treatment strategies is influenced by anticipated benefit, tolerability, prior toxicities, and practical constraints such as regulatory indications, access, and reimbursement conditions, which differ by tumor origin. Consequently, the real-world positioning of TKIs within treatment sequences remains insufficiently characterized at a national level.
"SEQUENCE-NET" is an ambispective observational study designed to prospectively document how TKIs are integrated into systemic treatment strategies for advanced pancreatic and extra-pancreatic NETs in routine clinical practice within the ENDOCAN-RENATEN network.
Hospices Civils de Lyon is the lead sponsor of 1,854 studies on the registry; 441 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Eligible patients are adults with histologically confirmed, well-differentiated, advanced (metastatic or unresectable) NETs (G1-G3) initiating a TKI in routine clinical practice. The patients will be recruited from the expert centers of ENDOCAN's RENATEN network or affiliated collaborating centers participating in SEQUENCE's study.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
For main study :
For the ancillary study :
- Advanced/metastatic NETs (usually, ileal or lung NET, but other rare location/unknown are allowed) with clinical carcinoid syndrome and/or elevation of urinary 5HIAA> 2 upper limit of normal (ULN) Initiation of TKI in routine clinical practice, serving as the index treatment line for prospective inclusion.
Exclusion Criteria:
For main study :
For the ancillary study :
- Patient not wanting to participate (filling in the questionnaires)
Adults patients with histologically confirmed, well differentiated, advanced (metastatic or unresectable) NETs (G1-G3) initiating a TKI in routine clinical practice. These patients will have no intervention
Adult patients with histologically confirmed, well-differentiated, advanced (metastatic or unresectable) neuroendocrine tumors (NETs; G1-G3) and clinical carcinoid syndrome who initiated tyrosine kinase inhibitor (TKI) therapy in routine clinical practice. Patients will respond to the PRO-CSS (Patient-Reported Outcome measure for Carcinoid Syndrome Symptoms) questionnaire
Other: PRO-CSS questionnaire
PRO-CSS is a validated patient-reported questionnaire designed to assess the severity of carcinoid syndrome symptoms and their impact on daily life. It evaluates symptoms such as diarrhoea, flushing, urgency, abdominal pain, and fatigue, as well as their effects on daily activities, diet, travel, and overall quality of life. The questionnaire provides a standardized assessment of symptom burden from the patient's perspective and may help monitor symptom control over time. The questionnaire must be completed at baseline, than at 1, 2 and 3 months after TKI's treatment started.
Treatment distribution and therapeutic sequencing
Proportion of patients receiving TKIs at inclusion according to treatment lines and the distribution of prior systemic treatment sequences before TKI initiation
Time frame: From treatment initiation through 9 months of follow-up
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
This study is not yet recruiting, as verified in Oct 2026. You cannot join it, but the record below documents what was studied.
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